By Janet Weinberg
Frank Spinelli, MD, a GMHC Board member, recently came to speak to the entire staff. His topic -- Pee Shy, his latest book. I will admit, I was skeptical about what the presentation was going to be like. Well, let me tell you -- it opened up our staff in a way that I have not seen in a very long time. Staff approached Frank, person after person, to thank him for telling his own personal story.

Frank did not just write a book, he wrote a movement. The movement is about a very difficult topic: child molestation. Frank is brave enough to talk about his own childhood struggles after he was molested by none other than his Boy Scout leader who was also a cop. After Frank disclosed his truth, clusters of people gathered. Two staff members stated to me, "Frank told my story, how did he know?" So what were the commonalities?

- Frank and the staff members, as well as the molesters, were connected to a church.- Their molesters were people in authority.- Their parents would not report the abuse to the police once they learned of the incidence.- They were ashamed of being a target of the molesters.

One in six boys and one in four girls are molested by age 18. And why exactly do we not talk about it? We do not ask about it when a child's behavior changes, when we are taking medical histories or even during psychological interventions. There are signs. Yet parents do not speak to their children about sexual abuse. Children do not hear about it from their educators. "Don't ask, don't tell" did not work for the military and it certainly does not work for children who are not empowered to protect themselves from an adult.

There are similarities that often happen after abuse has occurred. Sexually abused children are prone to risk-taking behavior including unprotected sex, substance abuse, isolation, addictions and obesity, which are all telling signs. From Frank we learn that not all pedophiles are child molesters but all child molesters are pedophiles -- as some pedophiles do not act on their sexual desire of children. We must look for signs of abuse in the child and behavior patterns of the molester. Yet somehow we fail to do both. This puts us at double risk.

Why does an HIV/AIDS organization care so deeply about this issue? Some of the behaviors that can occur years after molestation can increase the risk of the child to become exposed to HIV as an adult. Substance use and other addictions can put a person at higher risk. Depression and a sense of self-worthlessness can also be risks for HIV. We know firsthand this is a critical issue for both our HIV-positive and HIV-negative clients who have experienced abuse in their childhoods.

The movement that can come out of the book, Pee Shy makes way for these courses of action:

1. The public can be made aware of the frequency of molestation.
2. Parents can learn the profile of molesters.
3. Parents can learn what signs to look for if their child is molested.
4. Educators can learn the necessity to teach about this problem.
5. Victims can learn they are not alone.
6. Victims of molestation can learn that there is help and mental health treatment that can assist with the after effects of abuse.
7. Health care professionals can learn to screen for abuse and begin the healing process.
8. The impact of the abuse, especially if not addressed, can last for years leading to potential risk of HIV and other sexually transmitted infections (STIs).

Frank is a brave man for exposing a taboo topic, a topic that has plagued children since the beginning of time, a topic that parents and children are ashamed of when they are prey to a predator. We can all do a better job at addressing molestation before it happens and to help the victim recover after it happens. Our collective involvement in this movement can help decrease new HIV infections.

By James Lister
In 1984, I was 30, and my friends started to get sick and die from AIDS. In 1989 I asked my doctor to test me for HIV. By this point, I had lost 50 friends to AIDS. Because I had lost so many people I was sexually related to, I knew that the test would come back positive. Yet, I was still stunned. I was really scared. I thought I was going to die like all of my friends and that my plans were never going to happen. The impact was so devastating, the fear was so overwhelming that I didn’t tell anyone, even my friends who were sick. I had always thought that my health was my most important asset. Now I had a disease that always ended in death.

Years of Increasing Loss and Isolation

I started to pour myself into my business, becoming isolated from everyone in my life. I also started drinking heavily to numb and remove myself from the world.

During the early years of the epidemic, many of my friends, who were in the hospital dying, lost their health insurance due to a claim by their insurance providers of a “pre-existing condition.” The anxiety over losing my insurance led me to pay in cash for all HIV-related medical expenses, which resulted in financial insolvency and added to my fears, anxiety, insecurity, and increased isolation.

In 1996, my test results indicated that my T-cells had fallen to 133. My doctor wanted to put me on medications. I wanted to wait as my friends died — the number of acquaintances, friends, and lovers I lost since 1984 now totaled 200 — because they had burned through all the antiretroviral medications (ARVs). I made a deal with my doctor that if the next test results were to come back with the same T-cell count, I would go on medication. And they did.

My first regimen of medications was time and diet sensitive. I had to take them precisely every eight hours, with food. It was a constant problem to work in my catering business and try to stay adherent. Fortunately, the virus responded well to the medications and I achieved an undetectable viral load. Unfortunately, the medications were still experimental. Although the FDA approved them, the long-range effects were not known. I started developing high blood pressure, and my cholesterol and triglycerides shot up. I also suffered from lipodystrophy and lipoatrophy — conditions characterized by selective loss of body fat — and additional medications were necessary. What started out as three ARVs, taken three times a day, had now grown to over two dozen pills, taken two or three times a day.

A Promise to Live With HIV

Facing what was still a death sentence, and having witnessed the effect on my aunt and uncle of the death of their son at age 21, I made a promise to myself in 1996 that I would not die before my mother and father.

The year 1996 was also the first time I went to GMHC, what was then called the Gay Men’s Health Crisis. It was a very significant event, one that changed my life. I found staff members who made me feel safe. I started having lunches and dinners in the meals program as often as I could while still working. I met other clients who made me feel comfortable; they had similar experiences to share. This gave me an outlet to share my burden. I didn’t feel so alone and overwhelmed. This was when I actually began to talk with people about living with HIV, which allowed me to believe that there was an alternative to dying. Plus, I was able to stop drinking excessively, and my chances to live longer greatly improved.

Major Setbacks to My Health and Well-Being

From late December 2001 to mid-January 2002, I suffered severe fevers, teeth-chipping chills, diarrhea, dehydration, lack of appetite, and excruciating headaches, all sapping me of any energy I had. I had to repeatedly change bedding after soaking both sides of the bed. I rarely showered for lack of energy.

One Friday, I decided I was going to shower, dress, and go to GMHC for dinner. After exerting all of my energy to shower, I attempted to get dressed and couldn’t. I called a neighbor and asked if they would help me get to St Vincent’s Hospital. Several hours later, I was admitted. During three weeks of hospitalization, I found out that I was allergic to morphine, Celebrex, Bactrim, Elavil, and Imitrex. The resulting diagnosis was, “We don’t know, but we found a giant benign tumor in your liver which would not have anything to do with any symptoms you had.” I was sent home.

As the year progressed, my health had seriously declined. My doctor insisted that I stop working and apply for Social Security disability benefits. No one in my family had ever applied for benefits until they retired in their late sixties. I felt that there was a stigma attached to applying for disability. Adding to my reluctance were the countless stories I had heard from and about people who were rejected, and they were in worse shape than I was. I was very fortunate to meet a part-time GMHC staff person who encouraged me and volunteered to walk me through the process of applying. He stayed with me through the entire overwhelming and humiliating experience.

When I was approved for disability on January 1, 2003, I went from working for 35 years and owning my own business for 20 years, to living on $330 a month for all expenses except rent and $165 a month for food stamps. The devastating humiliation felt insurmountable.

‘My Entrée Into Advocacy and Activism’

In 2007, I found out that I was being discriminated against by the rental assistance program that was supposed to help me by stabilizing my housing and providing me the finances for basic expenses such as bath soap, shampoo, a toothbrush, toothpaste, laundry and dishwashing soaps, and a phone line. As a result, I got in touch with GMHC’s Action Center, which assists GMHC clients to learn and use their advocacy resources to influence policymakers.

Through GMHC, I got involved with VOCAL-NY, a membership-driven grassroots organization that works on legislation to end the discriminatory policy in the HIV/AIDS Services Administration (HASA) rental assistance program. This would be my entrée into advocacy and activism. I met with other advocates and elected officials, most importantly the sponsors of New York’s 30 percent rent cap bill — former Senator Tom Duane and Assembly Member Deborah Glick. This bill would limit the rent burden to 30 percent of income for all clients qualifying for HASA rental assistance.

For GMHC’s AIDS Walk New York in 2010, I was honored to be the client speaker. Former Governor of New York David Paterson was also a speaker. I talked his ear off about the bill and its importance for people living with AIDS, while seated next to him on stage during the Opening Ceremony. Sadly, the Governor vetoed the 30 percent rent cap bill in October 2010.

Though my experience of advocacy and activism has not all been encouraging, I have felt empowered and learned that I could make a difference. This and the other forms of volunteering that I continue to do have helped me survive the trauma of ongoing health issues.

While the 30 percent rent cap bill has not yet passed, I have committed to see it pass the New York state legislature. I have even made another promise: that I will see all of my nieces and nephews graduate from college. The youngest is in fifth grade!

Here is my message that I hope will be helpful to others: Through volunteering, advocacy, and activism, I rediscovered reasons to live. My life is not what I thought it would be. My goals have certainly changed. What is most important is that I will not quit.

James W. Lister, a native of San Diego, Calif., has been a resident of New York City since March 26, 1979. He is a client of GMHC, member of VOCAL-NY, board member of VOCAL-NY Action Fund, renegade activist, and advocate. Jim is grateful to have turned 59 on July 4, 2013, and dedicates his work to all of his friends and loved ones who died too soon.

I officially started at GMHC 18 years ago in the blizzard of 1996. The job was part of a life change. After 15 years of me volunteering one night a week at the New York Presbyterian Hospital Emergency Room at the beginning of the AIDS epidemic, my husband asked if I wanted to change careers. Then I could incorporate what I so obviously enjoyed into the next phase of my career. He was correct. I went back to school and obtained my Masters degree in Health Care Advocacy from Sarah Lawrence College. After an internship in the Health Care Advocacy Unit at GMHC, I was hooked. Health Care Advocacy helped people receive access to care and insurance. While there has been a lot of change I am still with a fabulous Advocacy Unit, helping people navigate their health care options and access benefits. Someone asked how I handle the stress. It is simple - The clients and the staff have taught me so much over the years and given me back way more than I have provided.

In 1996, HIV/AIDS was still an uncontrolled monster. Procedures were not finalized so we, the advocates, could lobby the insurance companies and the doctors to have treatments funded. One client in 1996 had CMV retinitis, a potentially blinding eye condition. He needed a special process to be done, an implant in his eye, and it was not fully funded by his insurance. The process was still under review. A tentative code had been assigned by Medicaid, but the insurance company did not want to pay for it. I wrote letters and made calls, working closely with the doctor who wanted the client to have the needed implant covered. We succeeded. That client and I are still working together on other issues.

Also in that year, another client came in who barely had the strength to stand. Reuben in Intake called me so we could help ensure his care was paid for. He needed to be on COBRA from his job to continue to see his doctor and stay in treatment. His energy level was non-existent so we needed to be very hands on. While he had insurance, there were problems having his COBRA paid for, and his access to care maintained. He had lost his job and had no expectation of getting another one. During his medical care, which was successful, he rethought what he wanted to do so he could be active yet not jeopardize his health. He started volunteering in a different field and has found a completely different life.

Not all the clients I have worked with have survived, but those that have gone on are still with me, albeit more quietly.

In recent years, we have had a number of clients who work and then lost their jobs either due to the economy or due to their health. A number have thought they could not continue their insurance because they could not afford it and came to see me and my team about alternatives. Not everyone has known about ADAP, (AIDS Drug Assistance Program), which will pay for private insurance. It is a flexible program that has been an integral part of accessing health care here in New York. Regardless of a client’s previous salary, if they are on unemployment, they meet ADAP’s financial criteria. We help them assess the rest of the eligibility criteria, but more often than not I am able to give good news to someone who has just received a harsh blow. ADAP is also good for a newly diagnosed person while working out next steps. Their sensitivity towards the clients has been a very useful thing in a time of concern.

The people we work with are learning how to survive and cope with their diagnosis while the systems around them are changing. I have had to learn as well. Medicare Part D began on January 1,2006. Medicaid Managed Care was rolled out over 10 years and now the Affordable Care Act is underway. We have learned along with our clients and created networks at other agencies, as we all try to provide services. Some of clients and I reminisce over Medicare Part D or compare it to the new changes. Again that kind of perspective provides both me and the client support. Usually we never thought that we could laugh over a difficult issue while we were experiencing it.

Now I spend a lot of time counseling people on how they can return to work without risking their benefits or causing an overpayment which is quite a development after 18 years. Full-time work may not be an option for everyone but the possibility of more education can be, which I find very rewarding.

Working here in the Advocacy Unit at GMHC has been a wonderful experience with many highs and lows. I have grown in the process, utilized unexpected skills, and further honed my “nagging wife and elder sister” qualities. The hardest thing I have had to learn is that I cannot make someone do something. I can inform and make sure that the client is aware of the options, but the choice of the next step is not mine.

Lastly, I became a member of GMHC’s Consumer Advisory Board (CAB) at their invitation which has been a major compliment that I appreciate. This group advocates for the clients’ concerns which are shared at the monthly meeting. The CAB also educates clients about upcoming changes internally and externally. The monthly meeting is an open arena to discuss issues that I as a member can participate in or learn from which allows me to grow.

What could our movement to end the HIV epidemic accomplish with $24 billion?

According to an estimate from the financial services company, Standard and Poors (S&P), that is what the government shutdown cost the U.S. economy. The same political leaders heralding austerity as critical to our nation’s future facilitated shenanigans that cost nearly 30% of the $85 billion cut by sequestration this year.

This is why I woke up Thursday happy the shutdown ended but even angrier. Amidst this political theater, the real-world affects of federal funding cuts have received little attention. This is especially the case for people living with HIV/AIDS.

It’s time for that to change.

Earlier this week CNN shed light on the consequences of sequestration with a video featuring how cuts have affected programs and services at GMHC. The list is long and depressing: Food pantry bags cut 47%; substance abuse counseling sessions cut 20%; mental health counseling sessions cut 10%; 500 hours of legal counseling services cut; multiple layoffs; a furlough of the entire agency for 1 week; and much more.

Of course, our real focus should be on how these cuts affect the people who come to us for lifesaving services every day. When I spend time with them I hear stories that make my heart ache. One was shocked to learn that he could no longer receive additional portions from our hot meals program, the only nutritious meal he is able to get per day to help mediate the side effects of his medication. Another became distraught after learning that there was now a one-month waiting list to access individual mental health counseling.

As GMHC’s interim CEO Janet Weinberg shared in the CNN video, it’s not like there are other organizations with increased capacity to whom we can refer people in need. These cuts have caused every organization to bleed.

Just a few days before the shutdown, I joined several colleagues from the AIDS United Public Policy Committee for a Congressional visit day focused on the effects of the sequester. We met with several staffers of Members of Congress, including those representing our respectivehome states, Congresswomen Pelosi’s office, and the Health Legislative Aids for House Speaker John Boehner. Our visits with allies produced a unanimous message to bring home: We must actively pursue media outlets and allies to educate the public and lift the voices of people who oppose these draconian federal funding cuts.

Now that the shutdown drama is over, it’s urgent that we re-focus on sharing these stories. The stigma and fear still connected to HIV means that we have to find ways to both empower those willing to share publicly and protect those in need by being their voice when meeting with political leaders and the media.

We also must acknowledge that it will be extremely challenging for our allies in Congress sitting on the new super committee to roll back the sequester. We know that conservatives are already fighting to reduce the cuts to defense programs in sequester phase 2. They will not be as generous to the non-defense-discretionary programs that provide food, housing, and life-saving medication to people living with HIV/AIDS.

Despite these challenges, I still fundamentally believe that we can successfully restore federal support for the fight to end the HIV epidemic. We need to leverage public backlash against those responsible for the shutdown and debt ceiling scare to move political leaders to the center and support candidates in the mid-term election who understand our collective social and moral responsibility to care for each other and provide for our nation’s health.

AIDS United provides a critical structure for us to combine our time, talent, passion, and stories to call for policy change as a strong and unified lobby.